Chronic Pain Nightmare

My blog is about the "silent epidemic" as it is called Chronic Pain. The truth about chronic pain is that it knows no age limits or racial barriers. There are 73 million people in this country suffering from this deadly and unrelenting disease. I hope to call attention to the under treatment and stigma of chronic pain and the people who suffer just like me. I welcome your feedback and comments.
JUST REMEMBER, YOU ARE NOT ALONE!!
Jerry

Saturday, October 15, 2011

Hello everyone. It has been a long time since I posted anything on my blog, but it hasn't stopped you folks from reading. I want to take this opportunity to thank everyone that has read and left messageses. There is actually a lot of information an it and I plan to start writing again, but probably not as frequent. I stopped because it got so hard to write about pain when you are in so much pain. we will see how it goes.

Sunday, November 8, 2009

NATIONAL PANEL SOUNDS ALARM ABOUT LACK OF PHYSICIAN TRAINING TO TREAT CHRONIC PAIN; MAJOR HEALTH GROUPS ENDORSE NEW REPORT WHICH CALLS FOR URGENT MEDICAL SCHOOL AND HEALTH SYSTEM REFORM

“Epidemic” of under-treatment affects more than 70 million Americans suffering from persistent back pain, headaches, joint pain; disproportionately affects minorities and low income

WASHINGTON, DC (November 4, 2009)-- Warning that patients shouldn’t assume their doctor has enough knowledge to treat their pain, a national panel of experts today called on medical schools to train doctors and nurses on the basics of pain care, reform the nation’s reimbursement system, and address pain as a public health crisis. The group insists that without health reforms and better training to diagnose and treat pain properly, people with untreated pain may face a lifetime of pain as a chronic illness – which could lead to job loss, depression and in some cases, even suicide.

“Doctors, who don’t lack for compassion or medical skills, often offer only limited treatments to patients disabled by chronic pain,” said Lonnie Zeltzer, M.D., co-chair of the panel, and the director of the Pediatric Pain Program at the University of California, Los Angeles. “With little or no specific training in pain management, and working in systems that make it much easier to treat common conditions like high blood pressure than a complex problem like pain, doctors may intend to help but leave most patients under-assessed and under-treated. Minorities, children and women often faced the highest risk of under-treatment.”

The panel, convened by the New York City-based Mayday Fund, included anesthesiologists, neurologists, primary care doctors, pediatricians, emergency physicians, nurses, psychologists, pharmacists and patient advocates (the full Committee is included below). After a conference in Washington D.C. and deliberations that lasted over several months, the panel’s report, A Call to Revolutionize Chronic Pain Care in America: An Opportunity in Health Care Reform, says pain is a huge public health problem. They developed several recommendations for government agencies, Congress and the medical community to address.

The report and recommendations have been endorsed by more than 30 organizations, including the American Academy of Family Physicians, American Academy of Pediatrics, The Joint Commission, American Nurses Association, American College of Emergency Physicians, and the American Academy of Neurology (the list of current signatories is below).

“As we get closer to the possibility of health care reform, the frontlines of medicine - adult and pediatric primary care - could face enormous strains from millions of new patients seeking care for pain,” says Russell K. Portenoy, M.D., panel co-chair and the chairman of Pain Medicine and Palliative Care at the Beth Israel Medical Center in New York. “Primary care is the first stop for people in pain, and both the training received by clinicians and the system of care should facilitate best practices in pain care, but this is not the way it is.”

The Mayday Fund Special Committee on Pain and the Practice of Medicine writes that chronic pain should be reframed as a chronic illness since “the burden of chronic pain is greater than that of diabetes, heart disease and cancer combined.” People in chronic pain have longer hospital stays, and many duplicative tests and unproven treatments—all of which drive up the nation’s health care spending, the panel said.

Chronic pain costs the nation more than $100 billion a year in lost productivity and direct medical costs, the report says. “This is a wasteful system,” Portenoy adds. “Major reforms in the health care system are needed if we want to improve the quality and cost effectiveness of care for chronic illnesses, and pain is as much a chronic illness as diabetes and heart disease.” Although the impact of pain on patients and on society is among the most serious of public health concerns, chronic pain has been largely left out of the current national debate on health reform, the panel writes.

According to the report, about “one-third of people in pain report that their pain is disabling and has a high impact on their ability to function in daily life. Research suggests that the high cost of under-treated pain includes lost productivity. Pain is the second-leading cause of medically-related work absenteeism, resulting in more than 50 million lost workdays.”

The authors pay particular attention to the numerous studies that suggest low-income populations, minorities, women and children are more likely to be under-treated for pain or not receive pain care at all. If doctors do not recognize chronic pain as a serious illness, or as serious as others, or they perceive that pain complaints cannot, or should not, be treated, persistent pain results. In some cases, such as pain in young children and adults with dementia, patients may not report their pain, and under-assessment drives under-treatment.

“The tragedy of this system is that it leaves many people suffering from unrelenting pain,” says Zeltzer. “Pain that goes untreated may permanently change the body’s nervous system and may lead to pain that can be managed but never goes away.”

Federal policymakers have recognized the impact pain has on individuals and the health care system and have included provisions of the National Pain Care Policy Act 2009 (NPCPA) in health reform proposals. That bill calls for an Institute of Medicine Conference on Pain; increased funding for the National Institutes of Health to collaborate across institutes to find more effective treatments for pain and to better understand the biology of pain; a grant program to improve health professionals’ understanding of and ability to assess and treat pain; and better public education so that consumers understand the danger of letting pain go untreated.

“Remarkably, less than one percent of the NIH budget was devoted to pain in 2008,” Zeltzer said. “This amount is not commensurate with a public health problem of this magnitude.”

In addition to medical school reforms and expanded funding for pain management training programs, the panel cited specific measures that would ease this public health crisis. Among them:

•Health care providers, insurers and government agencies should eliminate disparities in access to pain care related to race, gender, age and socioeconomic status. All Americans in pain, including low-income Americans, should be offered timely and effective treatment for their pain.

•Government, health care payors and providers should develop coordinated health information technology (IT) systems to track pain disorders and treatments. Computerized IT systems can boost physicians’ knowledge about the best treatment for pain by providing them with best practice information quickly.

•The Department of Health and Human Services should reform payment to eliminate the current incentives that drive pain care toward procedures or unproven treatments. Primary care doctors should be reimbursed for the time it takes to provide comprehensive pain care to patients who are disabled by chronic pain—a system that can cost a little more up front, but often reduces the cost of treating pain over the long haul.

•The Surgeon General should mount a public education campaign to inform the public about the risks associated with under-treated pain. Consumers should understand that if they wait too long to treat acute pain they run the risk of developing a chronic syndrome, one that’s costly to treat and potentially disabling.

“Reducing the burden of uncontrolled chronic pain is a societal necessity, a medical challenge and an economic requirement,” the panel says.

The Mayday Fund is a New York City-based private philanthropy dedicated to alleviating the incidence, degree and consequences of human physical pain. The Mayday Fund does not lobby or retain individuals or organizations to lobby. The panel participants are listed below. To obtain a copy of the report please visit www.MaydayPainReport.org. This article is the pain of the mayday Fund.

Saturday, September 12, 2009

I will explain my title shortly, but first I would like to thank everyone for their comments. I had planned on giving up on my blog. I have been at this for almost 25 years, calling and writing congressman and senators, join other organizations. You name it I have done it. Of course like everyone else I am getting older, the pain is getting worse along with other problems, so after the post in February, I said to hell with it.

Then the comments and e-mails started coming from everywhere, so it gave me the courage to start making entries again. I know it will be through tears at times and anger at others, I will try again. For that I have you to thank, so I will continue as long as I can.

As for as the title, Sometimes I feel like pulling my hair out . We have now gone to 78,000,000 million people like you and I, living in CHRONIC PAIN . Are we any closer to getting help? HELL NO. If anything we are further away than ever. We all know the situation with the medical community. Most of them have opiodphobia which in itself is a mental illness.

A couple of months ago my primary care DR. that helps me, looked at me and said, you don't look right. I replied that I didn't know what he was talking about. He said that my eyes had bags under them. I replied that I didn't get much sleep the night before. He then said, have you been drinking? I said drinking, I don't even drink. I reminded him that I told him that I didn't drink on my first visit to him. He said would you be willing to take a drug test. By this time I was getting mad and I said Dr. knock yourself out. Take all the tests you want to any time you want to, because you want find anything with the exception of what is supposed to be there. So he sent me down for the test and sure enough he found nothing. The next visit he apologized. But that is the way I live, from visit to visit and I am sure most of the rest of you do also. I don't know about the rest of you but I am so tired of living like that.

Wouldn't it be nice if we got half the amount of good publicity as the drug dealers do bad. I don't know why the news media has to make everything about us so negative, but they have succeeded scaring most of the Dr's. in the nation to death. If that wasn't bad enough the average person feels the same way. I JUST WONDER IF THE THOUGHT EVER CROSSES THEIR MIND THAT THEY COULD BE THE NEXT PERSON TO BE IN CHRONIC PAIN. Even my own family has made statements about me getting addicted to opioids.I was talking to my sister a couple of weeks ago and she is a registered nurse. She said what you need to do is get off of those old narcotics and starting some exercise and you will feel better. There was dead silence on the phone for a while. She asked me if I was still there. I know smoke must have been coming from my ears.I said yes but I cannot believe that you would make a remark that STUPID. I said, how many times have I told you that I can't even get out of the bed most days without taking pain medicine. I cannot believe this country has been brain washed to be so cruel to poor people in unbearable pain but they do.

Monday, February 16, 2009

Everyone in chronic pain can relate to the part about "unrelenting Pain", no matter what is causing it. The same thing day in and day out. It doesn't stop for birthdays or any other day for that matter. Some of us are in pain as a result of a fall, a auto accident or some disease like fibrormyalagia. It really doesn't matter, its all pain. Its hard to believe that a country as advanced as the USA Can have 78 million people that live this way but its true. the Suicide rate is 4-5 times higher than other people and lets face it, there is probably not a single one of us that haven't thought of taking our lives at on time or the other. I certainly have.

Every day I read about some new pain drug coming on the market to fight pain. I ask myself why, because you can't find a doctor to prescribe it to you. What is going on in this country right now with the way chronic pain people are treated is a damn disgrace. I have someone that is helping me now but as always its not enough but it does help. He is my primary care physician.

FEAR the other word I talked about is something we all live with. Fear of what you may ask? Fear that if you have not found a pain doctor, that you never will find one. The other side of it is you have looked and looked and finally found someone to help you, but what would you do if something happened to the doctor you now have, or if he told you he didn't want to help you any more. I live in fear of my doctor saying he is going to stop helping me. I have no idea where I would turn. It took me a year of practically begging but then one day I asked my wife if she would go with me. My wife talked to him for quiet a while and that was the key. He agreed to help me. (That is a tip by the way). Another, tip is always go well dressed and have your spouse do the same. My wife always goes with me on every visit.

I still live in fear and dread every time I have to call for a refill. Such is the life of the chronic pain person

Tuesday, December 23, 2008

This post #3 of 3. For those of you who want to read it, Please drop down to post #1 and read up. I have lived for 26 years now with Chronic Pain in my lower back and nerve damage due to a new procedure and an inexperienced Surgeon. I am sure that some of you may be asking why in, the hell I am writing about an abdominal surgery.

1. Opiods can in fact cause abdominal problems because one of the side effects of most of them is constipation which can lead to blockage in the small intestine.

2. Because of the stigma associated with people in Chronic Pain, you can be mis-diagnosed by many idiot surgeons who think they are "little gods". Not all Surgeons are that way but many are. If you take any kind of pain medication for chronic pain, you are a drug addict. That's just the way it is and I DON'T HAVE ANY HOPE OF IT CHANGING ANY TIME SOON.

2. next thing that will happen is you will be treated and talked to like a dog.

I still find it hard to believe that you actually pay someone to treat you like I was treated. I had planned to wait until the next day to go back to the hospital day, but it was a good thing that I didn't. I had a high fever and my kidneys were failing. They had to put me on an IV. for 3 days to get my kidneys functioning again. As said before 2 of the 3 doctors refused to operate on me because they said I was a DRUG ADDICT and that was what was causing my problem.One of the doctors even yelled at me in front of about 10 nurses that I was nothing but a "damn drug addict". When she left 2 of the nurses were very angry and asked me if I wanted to speak to the Patient advocate in the hospital. When I told her what had happened she covered her face with her hands. That doctor regrets what she said, because she had to go before the vice-president of the hospital and apologize to me.

The one Doctor who was so nice to me said that taking opiods had nothing to do with my problem. He did say since nothing showed up on the test he would have to go in and do exploratory surgery. He said he would have to pull every bit of the small intestine out and inspect it an it was a risky surgery. He told me the small intestine was approximately 23 feet long. I couldn't believe it.

I agreed and the next morning I was in surgery. What he found surprised even him. A large ulcer just like the kind you have on your lip had some how gotten down into the intestine had grown for a while leaving a growth inside the intestine blocking it to smaller than a pencil. He took a photo of the section he cut out. I will forever be grateful for this one mans experience and compassion.

It has been a painful 2 months on top of my chronic back pain but I have recovered from that.

Now why did a man with debilating back pain write about this surgery.

Because there is even more of a stigma against chronic pain people than even I ever dreamed after 26 years. Sooner or later you are going to find yourself in this situation. If you are on strong pain medication, you will be treated like dirt and I mean by the doctors. Don't hesitate to ask for a second opinion. Don't be afraid to ask to talk to the patient advocate. Every hospital has one and that is what they are paid to do. I hope this helps someone.

Friday, December 12, 2008

POST # 2 OF 3.I decided to break this down into 3 posts because to tell the whole story would be to long, and I couldn't sit here that long. Everything I am writing is true and happened to me just 6 weeks ago. In order to under to understand the whole story, please drop down and read post #1 first.

One Sunday in September. I started getting sick at my stomach and as the day wore on it got worse. Finally I was so nauseous that I did what we all have done at some time in our life. I walked in the bathroom, stuck my finger in my mouth and started vomiting. I wasn't prepared for what happened next. The first couple of times it was the contents of my stomach. But after that I couldn't figure what was going on except I knew that I was very sick. Then it dawned on me, I was throwing up my own BODY WASTE OR BILE.

My wife rushed me to the emergency room of the largest room in Pensacola, Florida where we live. We sat in the emergency room for 7 hours waiting for a bed to come available. Finally we got to see a Doctor in the emergency room. I was trying to drink all of the water that I could because I was becoming dehydrated fast. The Doctor said I had a blockage in my small intestine, so the started running tests. The best test they have for this is drinking a big jug of contrast material, and have a CT scan. I kept at he contrast in my stomach just long enough for them to get a couple of pictures before I threw that up also. After what seemed an eternity the doctor came back in and said that nothing showed up on the scan to indicate a blockage, that it had probably worked its self free. The Son-of-a-bitch said they needed the bed for other patients and discharged me. My wife and I could not believe our ears. By stomach was starting to swell and I was in a lot of pain. After a very heated exchange I signed the papers and left.

All day the next day was a living hell for me. By this time You could place your hand on by abdomen and feel the intestines Turing and twisting in my stomach.

That afternoon I was back at the emergency room for the same thing. This time I saw a different doctor and after seeing the shape I was in and reviewing my chart he said you need to be in the hospital, so he had me transferred. The next day they were doing more of the same type tests they had done in the emergency room and came up with the same conclusion. After staying in the hospital and taking tests for a week, they discharged me and told me to try it for a few days. The same damn identical thing happened. There were 3 specialists working with me. The chief of surgery was a very nice and compassionate man. He told me that since nothing showed up on the test he needed to go in and do exploratory surgery and take all of the small intestine out, which by the way is 23 feet long, and inspect every bit of it.

The other 2 doctors thought they were little gods and were cruel as hell. By this time they had looked over my medical records and they had the answer, they thought.Because of the narcotics I was taking (their words) It was putting my bowels to sleep. Bullshit I said, I don't have any problem going to the bath room I told them.

I ran both of them out of my room after one of the called me a drug addict. The next day the nice doctor who was Chief of Surgery told me that if I wanted him to go in and do the exploratory surgery that he would. He said if I wanted to go home for a few days and think about I could. I agreed but I should have stayed in the hospital then and let him do it, because it almost cost me my life.

Saturday, December 6, 2008

As you can tell from my last entry it has been quiet a while since my last post and to be honest with you, I wasn't sure I ever would. I am doing this because what I have to say is important, especially to those of you who suffer from chronic pain as I do. I get so angry when I start writing about it, it is hard to keep going. but I promised myself that I would make this post if it took me a week.

For those of you like myself who have suffered from chronic pain, especially any length of time, also suffer from depression. Of course this comes under the heading of MENTAL ILLNESS. TO THE UNEDUCATED, THIS IS IS A SCARY WORD. I knew the stigma that used to be attached to mental illness, but since my focus has been on the spine which is my problem, I had paid very little attention to mental illness in the last few years. I have a great phyciatrist that I have beenseeing for 15 years. I have panic attacks also even though I don't have any phobias. He has me on xanax and paxil. I see him every 3 months he writes my prescriptions and I leave his office. No big deal, Right. !!! WRONG!!!!!!

Because of trying to deal and live with my spinal problems, I had never given much thought to mental illness and the digestive system. Some of the things that I have to say are going to be a little unpleasant to read but they are important because I just finished going through every bit of it to.

In mid-September I started having severe burning in my lower abdomen and I noticed that it was starting to swell. Next came the worst nausea I have ever experienced. I finally became so sick I walked into the bathroom, got over the commode an stuck my finger in my mouth, thats all I had to do. I wasn't prepared for what happened next.

While opiates are the answer to prayer for so many of us, there is one thing that people who take them like me should be keenly aware of and that is what they will do to your digestive system. Yes I am talking about constipation. I just finished a month of hell in the hospital and have a 14 inch scar down the center of my abdomen. As I was vomiting I wasn't ready for what I saw next. I was throwing up my own body waste or bile. I was in and out of the hospital 4 times in a period of 5 weeks. I was not prepared for what I had to go through in the hospital, but more than that I wasn't prepared for the way I was treated by the Doctors and some of the nurses.

Tuesday, August 19, 2008

I am at the point now, when I start a post I usually go through a series of emotions. Who in the hell wants to read about PAIN? Sometimes when I try to write, I become angry when I look back at my life, I think back to the day of my accident. Sometimes I just sit and look a my computer screen. Finally I turn it off, lay my head down and cry. It is becoming increasing harder to write about pain when you are suffering so much. I don't know what drives me anymore.

I don't seem to ever be satisfied with what I have written about Chronic Pain. Often I will see a story on T.V., but its always about the addict and those terrible narcotics. I watched a story on Fox news a couple of days ago. It was about school kids and and the majority of kids said they gained access to their parents prescription drugs. Something is wrong with this story. Where in the hell did their parents get so many opioid and opiate type drugs, that they could just leave them lying around in their medicine cabinets.

When I hear unsubstantiated stories like this from the news media, I go into a rage.They don't know or understand because for whatever reason this is the position of all of the news media. As for as that goes the general public have the same attitude.If you take any of the powerful drugs, you are a drug addict. That is simply not true. Unfortunately, it has to strike close to home or to the person themselves before they really understand what a pain epidemic we have in this country. It takes only a split second to go from a happy active person to a vegatible that relies on this powerful pain medication to sustain life.

There is not a day of my life that I don't feel like taking my 40 Cal. automatic pistol that is loaded with hollow point rounds and sticking it in my mouth. The only thing that has stopped me is my faith in Christ, the love of my family and last I really don't want to die. Everyone has a breaking where they can't stand it any more. The suicide rate in this country is 5 times higher for people in chronic pain versus people who are not. So Please, to all of the politicians, DEA, and doctors out there. There are over 75 million of us are suffering this agonizing pain 24 hours a day, 7 days a week. All we want is a life, not to sit around getting adicted to drugs. We are citizens of this great country also and should be afforded the same right to life in peace as everyone else.

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Disclaimer

The information on this blog is my own views based on living with Chronic Pain for 25 years and my dealings with the medical system in this country. These are my own words and my blog is in no way endorsed by any of the websites that I have linked to in my favorite websites. Dr. Charles Burton, of http://www.burtonreport.com/, has been kind enough to allow me to use some material from his site. This material will appear in quotes with a link back to the relevant page of his site. I encourage all who have spinal problems to study his information.

My anger and frustration with failed surgeries and other envasive procedures that have only caused more chronic pain for people like myself has motivated me to put my life of chronic pain into words. I also have done research on this topic for 18 years and though I am not a medical Doctor, my words are based on provable information.

My primary reason for even publishing this blog, is hoping to draw attention to the under treatment of Chronic Pain of the 60 million people in this country who suffer so much to the Politicans and Physicians in this Country.

Where is the "Compassion" especially from the medical industry.

This subject is not pretty or sexy, but someone has to talk about it. Just remember the next victim could be YOU!Chronic pain is one of the most stigmatized and ignored medical conditions in this country. Just go to some of the pain forums and you can see for yourself. Most of the people have multiple surgeries, fusions, and implants. What do they have to show for it? For the majority, like me, they have spent thousands of dollars for these proceduries and all they have to show for it is more pain. Then we have the pain management profession, most that are nothing but "procedure mills". If you ask for pain medication, unless you have a long term relationship with the Doctor, the answer is no I am afraid you might become addicted. Give me a break!! If I sound bitter and angry, its because I am. This has been my life for the last 23 years and my own personal experiences.